1. Hearing on Cross-border healthcare system Tunde Koltai Hungarian Alliance of Patient Organizations 29 February 2016

2. VIEWS FROM OUTSIDE Cross-border healthcare directive: 2011/24/EU European legal act – a directive, focusing on ‘Patients’ Rights’ What does this really mean for patients?

4. HUNGARIAN ALLIANCE OF PATIENT ORGANIZATIONS -established in 2013 -12 founders (e.g. rare disease, cancer, diabetes, osteoporosis, SM, coeliac disease, stroke, psychological disorders, etc.) -Mission: transparent representation of the Hungarian patient organizations, working for a patient-centered healthcare and health-policy, where the patients and their organizations are active partners of decision making process and elaboration of programs.

6. THE MAIN AIMS OF THE DIRECTIVE 1. Help patients to live with their rights to reimbursement for healthcare received in another EU country 2. Provide assurance about safety and quality of cross-border healthcare 3. Establish formal cooperation between health systems

7. HELPING PATIENTS 1. Information to patients - access to all relevant information via National Contact Points 2. Clarification of rules – patients will know: a) need for prior authorisation b) reasons for refusal c) level of reimbursement d) need for up-front payment 3. Procedural guarantees for patients’ benefit: a) clarification of responsibilities b) clear rules if something goes wrong c) right to review of administrative decisions d) right to judicial proceedings

8. HUNGARY

10. COUNTRY CHARACTERISTICS http://ec.europa.eu/health/cross_border_care/docs/2015_evaluative_study_frep_en.pdf

11. PATIENTS’ OPINION

12. HUNGARIAN LIFE-STYLE

19. HEALTH EXPENDITURE IN 2013 OECD Health Statistics 2015

22. PRESENT There is -a healthcare leaded by a state secretary as a department of a Ministry of Human Resources -a significant gap between the population health status and the healthcare budget -a migration of healthcare professionals (MDs, nurses and other assistants to the UK, GE and Nordic countries - a strong willingness to concentrate the healthcare providers to one state company -a plan to reorganise the National Health Service

24. Special Eurobarometer - 425

25. SURVEY AMONG HUNGARIAN PATIENT ORGANIZATIONS 2014 Have you ever heard about CBHC directive?60% Do you know any patient who tried it 0% Is there any demand for CBHC in your patient Group?80% Would you participate in a network tp monitor the implementation of the directive? 100%

26. SURVEY AMONG HUNGARIAN PATIENT ORGANIZATIONS 2016 Instead of answers and good examples – Questions only: - What is the number of the legal act? - What does it mean: cross-border healthcare? - Only one positive example arrived: „dialysis tourist services”

27. QUESTIONS TO NCP 14% rights by the Directive 24% rights by the Regulation 1% other NCPs 9% cross-border healthcare services 4% pre-authorization 4% reimbursement procedures 3% HC providers 5% HC services 1% quality and safety 1% prices 3% equity 3% healthcare collaboration 3% complaints 5% general operational questions 21% local and EU healthcare information Source: OBDK

28. STATISTICAL DATA HUNGARIANS TO ABROAD Period: 25.10.2013 – 31.03.2015 Requests arrived665 Pre-authorisation needed662 Without pre-authorisation 3 Authorized 491 Refused 67 Simply not-authorized 62 Process cancelled 45 Source: OBDK

29. STATISTICAL DATA 2014 FROM ABROAD TO HUNGARY Outpatient care 74% Hospital care 20% Dental care 2% CT 3% EFI 1% RO 843 SI 217 HU 183 GB 180 Others 437 RO 292 HU 95 IT 26 GB 19 Others 62 Total: 2519 persons Source: OBDK

30. FACTS The patients are NOT going abroad because: -The ‚bigger’ treatments are subject of prior authorisation -The ‚smaller’ treatments and/or medicaments and/or medical devices will not be reimbursed (below the limit) -Extremely high costs of the ‚official translation’ – even higher than the reimbursed amount -The reimbursed amount is below the real costs which was invoiced and pre-paid to the healthcare provider because of the local „list-prices” of the NHS

31. FACTS The healthcare providers are NOT interested in CBHC because: -They can not invoice the real costs of the interventions – unless the patients’ budget would allow it – because they have a ‚price-list’ of NHS and these prices are not reflecting the real costs -Some countries’ patients could not be authorised to treated abroad

32. SWOT Evaluative study on the cross-border healthcare Directive (2011/24/EU – Final report 21 March 2015 Additional weaknesses: -Differences in the invoiced and reimbursed amounts -Communication difficulties -Requested „official translation” – high costs Additional threats: -MS Health Services force a „filter”/„gatekeeper” function -Missing the harmonized/validated quality and safety indicators/values of healthcare providers

33. WHAT PATIENT ORGANIZATIONS NEED AND CAN DO? - Be regularly informed about the statistics and impacts of the Directive - To get trainings for being able to raise awareness of their members - Propose concrete measures of interest to their members - Insist on NCP to involve the patient organizations as regular partners - Create clear guideline/flyers about the patients' rights and rules - Feedback about experiences to decision makers

34. RARE DISEASE PATIENTS - Easier access to information - NCP will make patients, health professionals and tax payers aware of the possibilities for referral to other MS-s - Dissemination of expertise - By means of e-Health tools, databases (Orphanet, etc.) and experts of European Reference Network - Fostering appropriate clinical assessment - Decisions about prior authorisation (for diagnosis especially) should be based on appropriate clinical evaluation by experts in that field